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La Asociación MPS Jajax y Médicos Mexicanos se unen para apoyar a niños con enfermedades poco frecuentes en el Primer Congreso de Mucopolisacaridosis y Enfermedades Hematológicas Raras

* Se calcula que existen alrededor de 7 mil enfermedades raras y que el 10% de la población mundial esta predispuesta genéticamente a padecerlas

* Una de las variantes de las MPS’s, es la Mucopolisacaridosis Tipo 6 (MPS6), una enfermedad de origen genético que afecta a 1 de cada 400,000 niños nacidos

* Actualmente existen 15 pacientes con la enfermedad de MPS6 en México que aun no reciben tratamiento

El día de hoy, en el Hotel Holiday Inn Select de la ciudad de Guadalajara Jalisco, dará inicio el Primer Congreso de Mucopolisacaridosis y Enfermedades Hematológicas Raras. Durante los días 4 y 5 de noviembre, médicos especialistas pondrán en marcha acciones y sumarán esfuerzos para detectar tempranamente a pacientes con MPS y enfermedades hematológicas raras en toda la república mexicana.

“La misión de este Primer Congreso de Mucopolisacaridosis y Enfermedades Hematológicas Raras es mejorar – a través de la investigación, la experiencia y la transmisión de información – el conocimiento de estas enfermedades para beneficio de los pacientes que las padecen en nuestro país”, comentó el Dr. Jesús Navarro, Presidente de la Asociación MPS JAJAX.

MPS es una enfermedad genética poco diagnosticada, incapacitante, degenerativa y rápidamente progresiva, causada por la carencia de un grupo de enzimas lisosomales. La carencia específica de una enzima determinada ocasiona el tipo de MPS. Clínicamente los pacientes con MPS pueden tener anormalidades en su apariencia física como talla baja, frente prominente, aspecto facial tosco, opacidad en la córnea, deformidades articulares. Las sustancias tóxicas se acumulan en corazón, hígado, bazo, cerebro, hueso y articulaciones; asimismo presentan producción densa y excesiva de moco produciendo obstrucción de vías respiratorias superiores, infecciones respiratorias crónicas y pérdida de la audición.

“Sabemos que el trabajo en equipo es fundamental para sacar de la invisibilidad a este grupo de la población que sufre una enfermedad poco frecuente y que se siente desamparado, aislado y desprotegido ante su situación” estableció el Dr. Navarro.

En este momento, en el mundo se cuenta con una terapia de reemplazo enzimático para MPS I, II y VI. En México, en mayo del 2005, se aprobó el medicamento Naglazyme como la única terapia de reemplazo enzimático efectivo para tratar la enfermedad de MPS6, la cual es aplicada a través de una infusión intravenosa semanal. El paciente recibe el medicamento que suple la función de la enzima faltante y de esta manera se limita la enfermedad y permite mejorar no sólo el estado clínico del paciente sino también su calidad de vida.

A pesar de que ya hay una esperanza de vida para las personas con Mucopolisacaridosis tipo 6, aún existe desconocimiento de la enfermedad por parte de la comunidad médica lo que provoca que no se diagnostique con precisión y, por tanto, el paciente tenga grandes dificultades para acceder al tratamiento adecuado.

Actualmente existen 15 pacientes más con la enfermedad de MPS6 en México que aun no reciben tratamiento en las instituciones de salud que les corresponden.

Se estima, que existen alrededor de 30 casos más sin diagnosticar en México y que necesitan tratamiento.

En el 2010, en México, se realizó la primera aplicación del tratamiento para MPS6 a un niño de 6 años de edad en Hospital ISSSTE de Guadalajara, Jal.

“Hemos avanzado mucho en el tema de la Mucopolisacaridosis, sin embargo, aún existe un hueco en el diagnóstico de MPS 6. Creemos que puede haber muchos pacientes que viven con la enfermedad y no lo saben. Es importante también concientizar a las autoridades para que todos los niños afectados cuenten con el diagnóstico adecuado y reciban el tratamiento de manera oportuna”, enfatizó el Dr. Jesús Navarro.

El diagnóstico se realiza a través de exámenes clínicos y por medio de una prueba enzimática en gotas de sangre seca realizada en papel de filtro, asimismo es importante conocer el historial familiar para una mejor evaluación.

“Confiamos que este día sea el mejor ejemplo de unión, solidaridad y compromiso con todas las familias afectadas por MPS y Enfermedades Hematológicas Raras”. Finalizó el Dr. Jesús Navarro, Presidente de la Asociación MPS JAJAX.

Para mayor información visite la página: www.mpsjajax.com

Fuente: Comunicado de Prensa

Acerca del autor



  • Hola yo tengo un sobrino con anemia de blackfan-diamont y ademas microcefalia sintmatica necesita un medicamento que vale mas de 200.000 mesos ,mesuales necesito buscar apoyo donde puedo hacerlo. aca no existe ningun convenio o algo para que sea mas varato mi hermana es madre soltera y el papa poco aporta no puede trabajar por no poder dejar a su hijo solo el bebe tiene 10 meses. si pueden darme alguna direccion se los agradeceria. gracias

  • mi hia era una nina con con ese sindrome.. fue muy especial y hermosa pero Dios se la kiso llevar. le doy gracias por ke me la presto por 6 anos con ese henfermedad silenciosa. despues de una larga operacion a corazon abierto …nunca la olvidare la sigo extranando te AMO zurisaday nunca t olvidare….. cuiden asus hijos de esta enfermedad silenciosa

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